short walk to nowhere

I had my second PT appointment today and actually pulled off walking on a treadmill. I suppose 5 minutes at 1.2 mph doesn't seem all that impressive to you, but to me it was a big deal just to get the balls to get on the stupid thing. I had this very clear image in my head of me putting one foot down on the conveyor belt and just completely flying off the back end of the machine.
Must be from growing up with too many cartoons or episodes of I Love Lucy or something.

shock value

If there are any other amputees out there reading this (and I know for a fact there is at least one--hi Sara!), I would love to know if someone can tell me what the &*%^ is going on here, and if anyone knows of a fix.

Four times over the past two weeks, I've been startled awake in the middle of the night by really bizarre pains in my residual limb. I wouldn't call them "phantom pains" because they aren't in the "invisible limb". They are actually within/on/through my stump (hate that word). Anyhow....I've never actually been electrocuted or tasered in my life, but I imagine that this is how it would feel. It's like I'm getting shocked, like a strong electric jolt, as if some kind of current is zapping through my leg.

Now a couple of weeks ago, I bought an electric blanket, and I actually thought that maybe it was the heat that was triggering the new pain. I also had some wild ideas about the electric current running through the blanket, even though that seems a little farfetched. But it can't be the blanket. I've been out of town the past few nights, staying in a hotel (with no electric blanket), and last night I was up for about two hours, getting shocked into exhaustion. Changing positions didn't seem to help much, nor did massage (which was soothing, but didn't keep it from reoccuring). Every time the jolting would stop, I'd settle myself down again, I'd just about doze off, and then I'd get zapped again. Each time it was like a full body jolt. By the morning most of my muscles ached from tensing up every time it happened and it felt as if I'd been holding my breath for hours. It was quite horrible and I don't even want to go to bed tonight for fear of it happening again.

SO. Has this happened to anyone? This is now almost 2 years post amputation, and I thought most of this monkey business stopped after awhile. I did I have milder forms of this shocking feeling happen right after the amputation, but it's been a really long time. Is it related to using the prosthesis, you think?? Maybe my nerve endings are just all jangley (is that a word?). I don't recall this happening last year when I was able to wear a prosthesis periodically, though.

And I guess the bigger question:
Does anyone have any idea what to do about it??

Would love to know......

let the rebirthing begin

So my last post was about Wednesday.
This post is about Thursday.
And it's Sunday.
(so I'm behind....what else is new)
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Early Thursday morning I had my first Physical Therapy appointment for gait training (aka: now get yer ass up and walk damn it!).

TheMIG came with me, which I thought was so sweet and supportive...although it was later explained to me that he went because he wanted to actually SEE how it went, as opposed to HEAR about it, because he knew I'd leave things out if I was asked to describe the session. Well, phooey...I'm sticking with sweet and supportive. But he does have a good point. I don't think I could have described the look on my face when I actually took a few steps without any kind of assistive device (parallel bars, crutches, canes, etc).

I wore a prosthesis very sporadically Dec 04-Jun 05, but I was never able to take anything that looked like a real step without something to hold onto. In fact, I was even told that maybe walking with a cane was as good as it was going to get for me. I have a hard time buying that when I see that some amputees manage to compete in triathalons. I mean, I'm not asking for anything fancy here...I just want to walk. And if they can do a triathalon, surely I can walk without a frickin' cane.

The real issue here is that I've never trusted my prosthesis. And for good reason--the last prosthetist was never been able to make a socket that would actually consistently stay on my thigh. It would literally become so loose that it would spin me into a 45-degree pigeon toe or, as would happen on a couple of occasions, it would actually fall off! And these "fit issues"would happen when I was in, let's say, the very back of a Costco ..and there I'd be....painfully hobbling for a loooong time to get to a place where I could futz with it and try it again. If putting it back on again was even an option at that point, which sometimes was not.

Well, I think this new leg man has finally made me a socket that stays on. For starters, it's adjustable. It has a buckle on it that I can crank tight when it gets loose as my thigh does it's daily bizarre shrinking and swelling thing. The socket he made doesn't look nearly as clean lined, sexy, and elegant as the last one (the one that would fall off).....but it's going to have to be function over form this time. You have NO IDEA how badly I wish the elves left me a digital camera for the holidays. I would LOVE to show you a photo comparison of the old socket to the new. This new one stays on, yes, hooray!! But it looks like I made it myself playing with a glue gun and a first aid kit. I kid you not. It even has DUCT TAPE on it in places. No shit.

But it works. And it stays on. And I feel stable. And I actually took a few steps hands free that even looked like real steps, knee bending, no stumbling or hesitating, and only a very slight limp. But I only got a few of those good steps out, because on that note, let me say:
DAMN MAN! MY ASS IS OUT OF SHAPE!
I haven't used some of those muscles in a very very long time. I got tired more quickly than I expected.

The PT really recognized my trust issues and has me doing these very small, repetitive leg movements that from the outside probably look like nothing exciting is being learned...but the exercises are designed to help me understand what this leg can do, and what it cannot...and what I can do, and what I cannot. They are designed to get me trust the prosthesis.

Bottom line: I feel a bit more enthusiastic about putting in the hard work than I did on Wednesday. And THAT to me is worth it's weight in gold.

the death and rebirth of self-acceptance

I feel like I’m forced to jump (hop?) into an entry about dancing. And I don’t have the time to post another entry first that would give you context or a history of my dancing. And I’ve already told you that it's important for me to make sure you have context for some reason (one that I do not yet understand). But what I need to get out here feels important and big and necessary to do now before it is lost in some word.doc never to be found again.

So here we go... a dancing post, sans context:
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Wednesday night I met with a few members of the dance company I will be performing with in 2006. We were to be led in a night of dance, art and solstice ritual... the core material for the evening relating to the performance piece that is being created/choreographed, and ritual being part of the process guiding us to the performance.

Doffing our clothes and becoming naked, we each chose our own little space in the room. We relaxed onto the floor and were led to connect with a part of ourselves that is “dying” and then improvised movement from that place. Then we were led to come to stillness again and then connect with a part of ourselves that is “birthing”. And we danced from that place, as well. At some point we checked for poignant or repetitive movements from both dying and birthing, and we brought the movements together.

Well, Wednesday was my first time wearing the new prosthesis. It’s been six months since I’d made an attempt at making it work, and the several attempst I have made over the last year and a half have not been what I’d call successful (even though I’ve learned a little bit each time, and I seem to have retained what I’ve learned--hoorah). There have been so many attempts, that I no longer have the excitement I have had about it in the past, like the first time I put it on. Like when I realized I could be standing and moving through space and be holding the hand of someone I care about... all at the same time. Or like when I had the excitement of putting on pants and realizing that the Average Joe probably wouldn’t be able to figure out why I have a limp. The excitement of "I've got a little secret under here!" (I know it's nothing close, but it's kind of like going to office in a business suit when you're wearing a leather g-string or something underneath.).

Well, this time, I don't have excitement. At all. What I have (and yes, I know it will change) is the sinking feeling that I have to do a whole lot of work for what I see as no instant return of gratification.

* I am wearing a prosthesis that is still under construction and makes me look as much, if not more, like a freak as being limbless (you have no idea how bad I want a digital camera folks — you really need to see this thing — the socket has DUCT TAPE on it for crying out loud... it looks like I went out into the garage and made it myself).
* I am wearing a prosthesis AND using crutches, because that's the point I'm at in my physical therapy... so I don’t have an ease of movement. What I have is a gangly mess of equipment.
* I have pain and discomfort and my skin and my muscles adapt to the materials and the workload.
* I have mental strain as I think about every single fricking step I take. I have a very frustrating time as it takes me twice as long to get from point A to point B as it usually does

I mean NOTHING in my life is immediately improved by my wearing this damn thing, AT THIS POINT. I grant you that down the road this may all change, but it makes it very very difficult to want to sign-up to put this damn thing on every day, when leaving it off means I could remain fast, comfortable, relaxed and pain free.
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So back to Wednesday night and what it is that's dying and what is being birthed. It is basically the same thing in each case. And it made me cry while I was dancing it.

What is dying is my self-acceptance.

I’ve worked very hard to come to a place where I completely accept myself, my body, now, as it is, in this new configuration. I have done quite a bit of emotional processing and I now see myself as whole and complete again, just as I am. I accept myself. I feel natural.

There is something about wearing a prosthesis that to me feels like, in part, it negates my self-acceptance and takes it away from me. My emotions are extremeley complex, and this feeling of losing self acceptance is one of many sides of the same coin, believe me. But the point I'm trying to explain here is that I have this very strong feeling that putting on the prosthesis is completely contrary to my accepting the fact that I am missing a limb.

What goes along with this, is that I also feeling like I am not wearing a prosthesis for me, but that instead I am wearing a prosthesis for you (the collective “you”) because you need to see me looking like I have two legs so that you can accept me. Well, I already accept myself. But you want to help me be “restored to normalcy”. Are you helping me to be "normal" again so that I can be normal? Or are you helping me to be "normal" because it makes you more confortable than having to deal with someone different from you?

Well, I already feel normal. And so somehow, I feel my acceptance of myself dying just a bit.

What is birthing for me, oddly enought, is exactly the same damn thing. Self-acceptance. It's just in the seedling stage, but with a little water and sunlight, it shall grow. It would seem there might be a very high probability in my gaining something wonderful by having two legs again. I think it’s going to take awhile, but I think I will gain things like being able to hold your hand and walk with you. Being able to carry my own plate down the buffet line (which, actually, I have mastered on crutches…and that is something I eventually will blog about and teach you). Things like being able have options when going places that are not necessarily crutch or wheelchair accessible, not that much stops me, but it would be nice to have more ease.

Because I am so very curious about the mystery of what newness may be out there for me, I WILL give wearing a prosthesis more than a college try. I will give it everything I can give it before I make any kind of assessment of it’s benefit. And in doing so, part-time-trying will inlcude my birthing another layer of self-acceptance.
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After we finished dancing our deaths and rebirths, we layed down onto body sized pieces of paper, and had another person trace our outline. We spent some time adding artwork onto the paper with our shape, just as a beginning. Apparently we will work with these images again throughout the preparation for performance.

I always find tracing the body like that, kind of like making angels in the snow, to be completely magical and the little kid in me gets very jazzed.

This was my first time seeing my outline with only one leg. And I liked it. I think it looked neato. I was a little surprised I like it, but quite pleased by that. I probably liked it because it was my little inner 5 year old looking at it, and she isn't judgemental... but like I said, my adult brain is now comfortable with myself, too. And no, I'm not phsychotic and I don't read inner child books, so shut up.

As I did the artwork, I realized something else that’s been bugging me, and wrote it on the big paper:

You look at me and see what’s missing.
You don’t look at me and see what is still there.
I am still here.
I am HERE.
Over HERE.

This has made me think quite a bit about positive and negative space, and that’s all I can really say about it now, because I'm still deep in though about it.... but if you are a dancer or a visual artist of just about any kind, you probably know what I’m talking about. There is richness in the negative space. Because it is part of what defines the positive space.


Now, since this is AmpuTeeHee and it’s "often quite funny" (hoping you, too, see irony as a type of funny) let me tell you that I’ve relayed the “I am HERE” story to several people since Wednesday, and what has been hilariously sad is that EVERY SINGLE WOMAN I’ve told this to has said exactly the same thing back to me:

"I can't claim to know your experience, but it sounds kind of like how I feel when I’m talking to someone and they are looking at my boobs. It’s like, 'Hellooooo…my face is up HERE!' ”

Couldn’t have said it better myself.

comments about comments

I still have not quite gotten over my surprise that there is actually someone out there reading any of this.

Well, get this one, folks:
I'd love to acknowledge that fact, but I don’t know how to reply to your comments!
I can’t (yet, but I am trying) figure out where your email address is located in relation to your posted feeback. 'Cuz I’m not a geek. Not even close. I’m a moron. Even though I am the daughter of a computer genius, I sadly did not inherit the geek-gene. It is amazing to me that I am even able to turn on the computer....and, hmmmm....now that I think about it, I don’t even know how to do that. I actually broke the plastic power button on my CPU. Now the computer has to stay on all the time, drifting in and out of sleep mode.

SO.
I shall reply, here and now, here, to your comments:

To Jodi, who asked why I don’t write about my dancing:
Well, I DO write about it. I just haven't POSTED it yet. I’m getting there, though, I promise *smile*. I’m very new to this blog thing, and I’m still trying to understand what the differences are for me between journaling and blogging. I have many an entry just sitting in cold storage waiting to be worked over.
I have much to say about my dancing, and the neccessary editing job I am faced with is a bit daunting. I have four different dance projects/groups that I am involved with and I need to sort it all out. Stay tuned.

To mnvnjnsn:
I’d be glad to knit cat toys! Knitting and cats are two of my favorite things! Now if I can only figure out how to contact you!!!
By the way, I had no idea that Tad has a brother. “ Someone” (*ahem*) never mentioned it. There seems to be a growing list of animals left behind by “someone” in the wake of ending relationships (I was scowled at when I asked "someone" if there were more bastard "children" I hadn't heard of yet). I now realize that in addition to kittie toys, I may eventually need to knit up a dog sweater for a bereft corgie, too. Oh, and KnittyKittyToys are on the house.
Newsome, this is for you:

To Sara, the one person who I DO have the ability to email:
Aye aye aye!!!! I owe you an email! GADS! I have Sooooo much to tell you that it keeps me from sitting down to email you because I feel like I’ll be here for an hour, and I just don’t have an hour right now. So I do nothing. But I think of you OFTEN, and no, I don’t have $300+ for boots either, but I did find some that will fit my prosthesis for only $198.
Ummm...
Yah.
Right.
I really really miss the days being able to walk into Payless Shoes on Buy-1-Get-1-Free-Day and walk out having only spent $15.
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I hope some day to have TheMIG teach me how to do a few things on the computer. He is no ordinary geek, as he went shopping this week and has now transformed himself into SuperGeek aka LaptopBoy. And he is very yummy when he's being geeky, and don't ask me why (and don't laugh), but I get excited just watching him type and click and stuff. And now LaptopBoy can be doing that just about all the time. Anyhow, maybe he can teach me to do a few things....liiiiiiike reply to comments (doh!). And put links in the sidebar (so that it doesn't say "edit-me".) And get a photo up near/in my profile.

If I experiment long enough, I might be able to figure a few things out on my own (like I figured out how to put links and photos in the text), but when I do figure things out, it's usually just dumb luck.

a label i can live with

I don't think I've been posting long enough for anyone to be able to tell that when it comes to being an amputee, I am primarily positive about it. Don't get me wrong, it's no joy ride. I do allow myself to have feelings of sadness or anger or depression (or whatever--and the list can be long) about being an amputee...but I allow all of my feelings to be present because I believe that being immersed in so called "negative feelings" is much healthier than squashing them down. But make no mistake: I don't live in those feelings. I just allow myself to visit them. Honoring them helps me move through them, and besides----they're excellent fodder for creating art, silly.

So anyhow, for the most part, you'll find me to be quite the optimist.
I don't let losing a leg be the End All Be All definition of me.
And my life is great.
So what is there to complain about? Right??

Wrong.
Today I'm going to complain about people labelling me.
Actually, to be more specific, people who insist on labelling my feelings.

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Something drove me absolutley insane while I was in the hospital recovering from the car accident. People would visit and tell me what a "strong" person I was, or how "brave" or "courageous" I was, or (gag me, please) what an "inspiration" I was.

I hated it then.
And almost two years later, I still hate it now.

I am not strong. There are still days that I crumble underneath the weight of this experience. Sometimes I wake up and I just don't want to be a gimp anymore. I usually whine quite a bit, and sometimes I cry, and then I pick myself up by the bootstraps anyhow. If I can't pick myself up, I give myself a day or two to feel pitiful. But I personally do not see a connection between choosing to forge ahead and being strong. Often there isn't even a choice but to forge ahead. It's more about knowing that I have responsibilities and I dont have a choice but to take care of things that are dependent upon my effort. Please stop patting me on the head and telling me how strong I am. I'm just getting MyFK ready for school and feeding the dogs.

Also in this category of judgements is when someone tells me that if this happened to them, they'd probably just end it all. Great. Thanks for sharing.

I am not brave or courageous. I don't know why I see it this way, but I believe bravery is also a choice we make. Debate me if you care to, but I believe that we get faced with something and we choose to deal with it bravely. Or we don't. Separate from the issue of being faced with it.

I dont deal with this situation bravely. Not even close. Nor do I take this as a challenge (from you or from myself or from the the Powers Above) that I need to triumph over. I just deal with it. And usually I'm scared.

Many have told me that bravery is when you are scared, but you make the choice to face your fears and move forward anyhow, despite your fears. I'm sorry, but I don't have a choice. I have to do life this way. This is not like the bravery I needed when I quite my high paying job to go to culinary school so that I could start on the bottom rung again and slice tomatoes for a living. THAT was a choice, and I had to be brave to make that choice. Took me five years to get the balls to do it, by the way.

I am defintely not an inspiration. For starters, I dont want the responsibilty of inspiring anyone. I will never be a motivational speaker or be the head of an amputee support group. I might end up being the impetus for you having your own feelings within you that inspire you. Fine line between between being inspirational and being an inspiration, I guess...but let me illustrate:
It's like when you and your fat lazy ass are riding the escalator and you see me hopping up the stairs on one leg and crutches, and you somehow get insipred by that. But I was just getting up the stairs. Because I'm scared of the escalator. And what is inspirational about that. You tell me.

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PEOPLE. What I'm doing is the same thing that most people do when facing a major crisis or loss. I'm dealing with it. I'm doing what anyone would do if we were dealing with an illness, a catastophe, or the death of a loved one, for example. There's nothing inspiring about it. It's just another part of being human. There is nothing different between me losing a leg and my girlfriends losing their breasts to cancer. It's just that tragically losing a leg is a bit more visible and shocking to you. But it's the same thing. This is just my version of what life deals all of us. This is the same type of difficult life lesson we all end up getting at some point or another if we live long enough.

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Well, Saturday night I was at a party, and headed straight for me was a casual acquaintance from a monthly discussion group (NOT for amputees--ha). I hadn't seen him in awhile. He wanted to tell me that he thought about me often. He'd been reflecting about things that I had said during the group meetings, and he was starting down the road of wanting me to know that I'd made some huge impression on him.

It's usually right about this point in a conversation that I start holding my breath. It makes it so that my ears start ringing once you start in with the litany of crap about who I am and what it is I am feeling.

He said, "(blah blah blah.....and I'd like to say you are so courageous...." My ears weren't ringing enough yet and I just knew I was about to have to stomach being christened as brave again.
But then he said, "....but courageous...that word is such bullshit."

I think I actually exhaled an audible sigh of relief.

"What I think...... is that you are determined."



And so thank you Joshua, whom I barely know, for giving me a wonderful gift.
The next time someone tells me I am so strong or brave, I can tell them that I am not. I am just determined.
Because that is true.
And THAT is a label I can live with.